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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

LN. Moorthy, E. Roy, V. Kurra, MG. Peterson, AL. Hassett, TJ. Lehman, C. Scott, D. El-Ghoneimy, S. Saad, R. El Feky, S. Al-Mayouf, P. Dolezalova, H. Malcova, T. Herlin, S. Nielsen, N. Wulffraat, A. van Royen, SD. Marks, A. Belot, J. Brunner, C....

. 2014 ; 12 (-) : 49.

Language English Country England, Great Britain

Document type Evaluation Study, Journal Article

Persistent link   https://www.medvik.cz/link/bmc15022808

BACKGROUND: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases. FINDINGS: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY©) to Simple Measure of Impact of Illness in Youngsters (SMILY©-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY©-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 12±4 years, with median disease duration of 21 months (1-172 months). We translated SMILY©-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa. CONCLUSION: SMILY©-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY©-Illness with its available translations may be used as useful adjuncts to clinical practice and research.

Allergy Rheumatology and Clinical Immunology University Children's Hospital University Medical Center Ljubljana Ljubljana Slovenia

Charles University Prague and General University Hospital Prague Czech Republic

Consultant Pediatric Nephrologist Renal Unit Great Ormond Street Hospital for Children NHS Foundation Trust London UK

Department of Pediatric Immunology University Medical Center Utrecht Netherlands

Department of Pediatrics Alberta Children's Hospital Research Institute Faculty of Medicine University of Calgary Calgary AB Canada

Department of Pediatrics Pediatric Rheumatology Unit Children's Institute Faculdade de Medicina da Universidade de Sao Paulo Sao Paulo Brazil

Department of Pediatrics Pediatric Rheumatology Universidade Federal do Rio de Janeiro Rio de Janeiro Brazil

Department of Pediatrics Universidade Federal do Rio de Janeiro Rio de Janeiro Brazil

FMF Arthritis Vasculitis and Orphan disease Research Center Institute of Health Sciences Gata Ankara Turkey

Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology Hamburg Germany

Hospital for Special Surgery New York NY USA

Hospital Infantil de México Federico Gómez México City Mexico

Kfar Saba Pediatric Rheumatology Israel Meir Hospital Kfar Saba Israel

King Faisal Specialist Hospital and Research Center Riyadh Saudi Arabia

Medical University of Innsbruck Innsbruck Austria

Pediatric Allergy Immunology and Rheumatology Unit Ain Shams University Cairo Egypt

Pediatric Department University Hospital Motol Prague Czech Republic

Pediatric Nephrology Rheumatology and Dermatology Department Hospices Civils de Lyon Lyon University Lyon France

Pediatric Rheumatology 47 New Scotland Ave Suite 197 Albany NY USA

Pediatric Rheumatology Aarhus University Hospital Skejby Aarhus Denmark

Pediatric Rheumatology Anna Meyer Hospital Florence Italy

Pediatric Rheumatology Asklepios Clinic Sankt Augustin Germany

Pediatric Rheumatology Calle Convento 252 San Juan PR USA

Pediatric Rheumatology Cerrahpasa Medical School Istanbul University Istanbul Turkey

Pediatric Rheumatology Clinica Pediatrie 1 Cluj Napoca Romania

Pediatric Rheumatology Complejo Hospitalario Universitario Ruiz y Paez Unidad de Reumatologia Bolivar Venezuela

Pediatric Rheumatology Division Adolescent Health Care Unit Universidade do Estado do Rio de Janeiro Brazil

Pediatric Rheumatology Hacettepe University Department of Pediatrics Ankara Turkey

Pediatric Rheumatology Head Rheumatology Hospital Pedro de Elizalde Buenos Aires Argentina

Pediatric Rheumatology Hospital General de México México City México

Pediatric Rheumatology Hospital Sant Joan de Déu Barcelona Spain

Pediatric Rheumatology Hospital Universitario Valle de Hebron Barcelona Spain

Pediatric Rheumatology Institute of Pediatrics Università Cattolica Sacro Cuore Rome Italy

Pediatric Rheumatology Institute of Rheumatology Belgrade Serbia

Pediatric Rheumatology Juliane Marie Centret Rigshospitalet Copenhagen Denmark

Pediatric Rheumatology Mt Sinai Medical Center New York NY USA

Pediatric Rheumatology Pediatric Allergy Immunology and Rheumatology Unit Ain Shams University Cairo Egypt

Pediatric Rheumatology Prim University Doz Bregenz Austria

Pediatric Rheumatology Red Cross War Memorial Children's Hospital Cape Town South Africa

Pediatric Rheumatology Research Center of Systemic Autoimmune and Autoinflammatory Diseases University of Siena Siena Italy

Pediatric Rheumatology Rutgers University Child Health Institute of New Jersey 89 French Street New Brunswick NJ 08901 USA

Pediatric Rheumatology Sanjay Gandhi Postgraduate Institute of Medical Sciences Lucknow India

Pediatric Rheumatology Semmelweis University Budapest Hungary

Pediatric Rheumatology Unit Children's Institute Sao Paulo Brazil

Pediatric Rheumatology Unit Department of Pediatrics Universidade Federal de Sao Paulo Sao Paulo Brazil

Pediatric Rheumatology Unit Department of Pediatrics University of Padua Padua Italy

Pediatric Rheumatology Unit IRCCS Ospedale Pediatrico Bambino Gesù Rome Italy

Pediatric Rheumatology Universidade Estadual Paulista Botucatu Brazil

Pediatric Rheumatology University of Florence Florence Italy

Pediatric Rheumatology University of Genoa Pediatria 2 Reumatologia Istituto G Gaslini EULAR Centre of Excellence in Rheumatology Genova Italy

Pediatric Rheumatology Wilhelmina Children's Hospital Utrecht Netherlands

Pediatric Rheumatology Zurich University Children's Hospital Zürich Switzerland

Pediatrics Pediatric Rheumatology Pediatric Immunology and Rheumatology Referral Center Aristotle University Thessaloniki Greece

Rheumatology Mount Sinai Medical Center Miami Beach FL USA

Rheumatology unit Department of Medicine State University of Campinas Campinas Brazil

Robert Wood Johnson Medical School Rutgers University New Brunswick NJ USA

University of Michigan Ann Arbor MI USA

Yokohama City University School of Medicine Yokohama Japan

References provided by Crossref.org

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$a Moorthy, Lakshmi Nandini $u Robert Wood Johnson Medical School, Rutgers University, New Brunswick, NJ USA.
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$a Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration / $c LN. Moorthy, E. Roy, V. Kurra, MG. Peterson, AL. Hassett, TJ. Lehman, C. Scott, D. El-Ghoneimy, S. Saad, R. El Feky, S. Al-Mayouf, P. Dolezalova, H. Malcova, T. Herlin, S. Nielsen, N. Wulffraat, A. van Royen, SD. Marks, A. Belot, J. Brunner, C. Huemer, I. Foeldvari, G. Horneff, T. Saurenman, S. Schroeder, P. Pratsidou-Gertsi, M. Trachana, Y. Uziel, A. Aggarwal, T. Constantin, R. Cimaz, T. Giani, L. Cantarini, F. Falcini, SM. Manzoni, A. Ravelli, D. Rigante, F. Zulian, T. Miyamae, S. Yokota, J. Sato, CS. Magalhaes, CA. Len, S. Appenzeller, SO. Knupp, MC. Rodrigues, F. Sztajnbok, RG. de Almeida, AA. de Jesus, LM. de Arruda Campos, C. Silva, C. Lazar, G. Susic, T. Avcin, R. Cuttica, R. Burgos-Vargas, E. Faugier, J. Anton, C. Modesto, L. Vazquez, L. Barillas, L. Barinstein, G. Sterba, I. Maldonado, S. Ozen, O. Kasapcopur, E. Demirkaya, S. Benseler,
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$a BACKGROUND: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases. FINDINGS: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY©) to Simple Measure of Impact of Illness in Youngsters (SMILY©-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY©-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 12±4 years, with median disease duration of 21 months (1-172 months). We translated SMILY©-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa. CONCLUSION: SMILY©-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY©-Illness with its available translations may be used as useful adjuncts to clinical practice and research.
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$a Roy, Elizabeth $u Pediatric Rheumatology, Rutgers University Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 USA.
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$a Kurra, Vamsi $u Pediatric Rheumatology, Rutgers University Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 USA.
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$a Peterson, Margaret G E $u Hospital for Special Surgery, New York, NY USA.
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$a Hassett, Afton L $u University of Michigan, Ann Arbor, MI USA.
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$a Saad, Shereen $u Pediatric Rheumatology, Pediatric Allergy, Immunology and Rheumatology Unit, Ain Shams University, Cairo, Egypt.
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$a El Feky, Reem $u Pediatric Rheumatology, Pediatric Allergy, Immunology and Rheumatology Unit, Ain Shams University, Cairo, Egypt.
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$a Al-Mayouf, Sulaiman $u King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia. $7 gn_A_00004607
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$a Dolezalova, Pavla $u Charles University in Prague and General University Hospital, Prague, Czech Republic.
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$a Malcova, Hana $u Pediatric Department, University Hospital Motol, Prague, Czech Republic.
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$a Herlin, Troels $u Pediatric Rheumatology, Aarhus University Hospital Skejby, Aarhus, Denmark.
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$a Nielsen, Susan $u Pediatric Rheumatology, Juliane Marie Centret Rigshospitalet, Copenhagen, Denmark.
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$a Wulffraat, Nico $u Department of Pediatric Immunology, University Medical Center, Utrecht, Netherlands.
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$a van Royen, Annet $u Pediatric Rheumatology, Wilhelmina Children's Hospital, Utrecht, Netherlands.
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$a Marks, Stephen D $u Consultant Pediatric Nephrologist, Renal Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
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$a Belot, Alexandre $u Pediatric Nephrology, Rheumatology and Dermatology Department, Hospices Civils de Lyon, Lyon University, Lyon, France.
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$a Brunner, Jurgen $u Medical University of Innsbruck, Innsbruck, Austria.
700    1_
$a Huemer, Christian $u Pediatric Rheumatology, Prim. University Doz, Bregenz, Austria.
700    1_
$a Foeldvari, Ivan $u Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology, Hamburg, Germany.
700    1_
$a Horneff, Gerd $u Pediatric Rheumatology, Asklepios Clinic Sankt, Augustin, Germany.
700    1_
$a Saurenman, Traudel $u Pediatric Rheumatology, Zurich University Children's Hospital, Zürich, Switzerland.
700    1_
$a Schroeder, Silke $u Pediatric Rheumatology, Zurich University Children's Hospital, Zürich, Switzerland.
700    1_
$a Pratsidou-Gertsi, Polyxeni $u Pediatrics/Pediatric Rheumatology, Pediatric Immunology and Rheumatology Referral Center, Aristotle University, Thessaloniki, Greece.
700    1_
$a Trachana, Maria $u Pediatrics/Pediatric Rheumatology, Pediatric Immunology and Rheumatology Referral Center, Aristotle University, Thessaloniki, Greece.
700    1_
$a Uziel, Yosef $u Kfar-Saba, Pediatric Rheumatology, Israel Meir Hospital, Kfar Saba, Israel.
700    1_
$a Aggarwal, Amita $u Pediatric Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India. $7 gn_A_00002132
700    1_
$a Constantin, Tamas $u Pediatric Rheumatology, Semmelweis University, Budapest, Hungary.
700    1_
$a Cimaz, Rolando $u Pediatric Rheumatology, Anna Meyer Hospital, Florence, Italy.
700    1_
$a Giani, Theresa $u Pediatric Rheumatology, Anna Meyer Hospital, Florence, Italy.
700    1_
$a Cantarini, Luca $u Pediatric Rheumatology, Research Center of Systemic Autoimmune and Autoinflammatory Diseases, University of Siena, Siena, Italy.
700    1_
$a Falcini, Fernanda $u Pediatric Rheumatology, University of Florence, Florence, Italy.
700    1_
$a Manzoni, Silvia Magni $u Pediatric Rheumatology Unit IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy.
700    1_
$a Ravelli, Angelo $u Pediatric Rheumatology, University of Genoa Pediatria II-Reumatologia, Istituto G. Gaslini EULAR Centre of Excellence in Rheumatology, Genova, Italy.
700    1_
$a Rigante, Donato $u Pediatric Rheumatology, Institute of Pediatrics Università Cattolica Sacro Cuore, Rome, Italy.
700    1_
$a Zulian, Fracnceso $u Pediatric Rheumatology Unit, Department of Pediatrics, University of Padua, Padua, Italy.
700    1_
$a Miyamae, Takako $u Yokohama City University School of Medicine, Yokohama, Japan.
700    1_
$a Yokota, Shumpei $u Yokohama City University School of Medicine, Yokohama, Japan.
700    1_
$a Sato, Juliana $u Pediatric Rheumatology, Universidade Estadual Paulista (UNESP), Botucatu, Brazil.
700    1_
$a Magalhaes, Claudia S $u Pediatric Rheumatology, Universidade Estadual Paulista (UNESP), Botucatu, Brazil.
700    1_
$a Len, Claudio A $u Pediatric Rheumatology Unit, Department of Pediatrics, Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
700    1_
$a Appenzeller, Simone $u Rheumatology unit, Department of Medicine, State University of Campinas, Campinas, Brazil. $7 gn_A_00007840
700    1_
$a Knupp, Sheila Oliveira $u Department of Pediatrics, Pediatric Rheumatology, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
700    1_
$a Rodrigues, Marta Cristine $u Department of Pediatrics, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
700    1_
$a Sztajnbok, Flavio $u Pediatric Rheumatology Division, Adolescent Health Care Unit, Universidade do Estado do, Rio de Janeiro, Brazil.
700    1_
$a de Almeida, Rozana Gasparello $u Pediatric Rheumatology Division, Adolescent Health Care Unit, Universidade do Estado do, Rio de Janeiro, Brazil.
700    1_
$a de Jesus, Adriana Almeida $u Department of Pediatrics, Pediatric Rheumatology Unit, Children's Institute, Faculdade de Medicina da Universidade de Sao Paulo, Sao Paulo, Brazil.
700    1_
$a de Arruda Campos, Lucia Maria $u Department of Pediatrics, Pediatric Rheumatology Unit, Children's Institute, Faculdade de Medicina da Universidade de Sao Paulo, Sao Paulo, Brazil.
700    1_
$a Silva, Clovis $u Pediatric Rheumatology Unit, Children's Institute, Sao Paulo, Brazil.
700    1_
$a Lazar, Calin $u Pediatric Rheumatology, Clinica Pediatrie I, Cluj-Napoca, Romania.
700    1_
$a Susic, Gordana $u Pediatric Rheumatology, Institute of Rheumatology, Belgrade, Serbia.
700    1_
$a Avcin, Tadej $u Allergy, Rheumatology and Clinical Immunology University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia.
700    1_
$a Cuttica, Ruben $u Pediatric Rheumatology, Head Rheumatology Hospital Pedro de Elizalde, Buenos Aires, Argentina.
700    1_
$a Burgos-Vargas, Ruben $u Pediatric Rheumatology, Hospital General de México, México City, México.
700    1_
$a Faugier, Enrique $u Hospital Infantil de México Federico Gómez, México City, Mexico.
700    1_
$a Anton, Jordi $u Pediatric Rheumatology, Hospital Sant Joan de Déu, Barcelona, Spain.
700    1_
$a Modesto, Consuelo $u Pediatric Rheumatology, Hospital Universitario Valle de Hebron, Barcelona, Spain.
700    1_
$a Vazquez, Liza $u Pediatric Rheumatology, Calle Convento # 252, San Juan, PR USA.
700    1_
$a Barillas, Lilliana $u Pediatric Rheumatology, 47 New Scotland Ave Suite 197, Albany, NY USA.
700    1_
$a Barinstein, Laura $u Pediatric Rheumatology, Mt Sinai Medical Center, New York, NY USA.
700    1_
$a Sterba, Gary $u Rheumatology, Mount Sinai Medical Center, Miami Beach, FL USA.
700    1_
$a Maldonado, Irama $u Pediatric Rheumatology, Complejo Hospitalario Universitario Ruiz y Paez, Unidad de Reumatologia, Bolivar, Venezuela.
700    1_
$a Ozen, Seza $u Pediatric Rheumatology, Hacettepe University Department of Pediatrics, Ankara, Turkey.
700    1_
$a Kasapcopur, Ozgur $u Pediatric Rheumatology, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey.
700    1_
$a Demirkaya, Erkan $u FMF Arthritis Vasculitis and Orphan disease Research Center, Institute of Health Sciences, Gata, Ankara Turkey.
700    1_
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